Jayne’s Recovery Story – Levaquin Toxicity

*The following is an individual’s story of surviving fluoroquinolone toxicity. It is not medical advice. Please see the disclaimer at the bottom of the story. Thank you, and please be cautious with all treatments.

Jayne’s story, written by Jayne:

In January 2011, I’d suffered a series of stressful events, culminating in a failed real estate deal that left me crying and surrounded by moving boxes. I knew I’d pushed my body and spirit beyond where I should, but I had no idea how badly both would soon break down. I wanted to go to my favorite spa and lie in a hammock for a week, but decided to go to Disneyworld instead.

Please know that I’m a runner at heart. I was running about 15 miles a week at that point—not a ton and not terribly fast, but running was a spiritual and mental practice for me, a huge part of who I was. The last run I took before I got on the plane was followed by a dark chill that swept over me. I had a strange feeling that I might never run again. I shook it off, because who gets premonitions other than women named Rebecca in gothic novels, right?

Either food poisoning or a GI virus hit me hard in the magical kingdom. Let’s just say the restroom wasn’t the happiest place on earth when I was done with it. I went to the ER, thinking they would just hydrate me so I wouldn’t pass out (which has happened to me with prior GI illnesses). The doc was a second away from injecting Levaquin into my IV. I stopped him, saying my brother had ruptured his Achilles after Levaquin. He said Cipro was less likely to cause that. I thought it was a rare thing that of course wouldn’t happen to me, and my brother is a big athlete who played softball and football. I was just a runner and a hiker, and I didn’t know what tendinopathy was. So I agreed to take Cipro and Flagyl.

I felt weird and spacey on both drugs but tried to stay on them. I ended up back in the ER because I was scared to fly home feeling so off. While in the ER, I developed akathesia—uncontrollable urges to move my body. The ER docs were too busy or clueless to figure out what was wrong. I think they gave me Benadryl and Valium and told me I was fine. Um, yeah.

When I got back home, I forgot to take the antibiotics one day and felt suddenly tremendously better. I stopped taking both drugs completely. Later that night, I felt like someone had beaten my calves with a baseball bat. That’s when I knew something was really wrong.

A week or two later, the tendinopathy started (severe in both Achilles, milder in the tib and other tendons, moderate in my knees.) I’ve always been a terrible sleeper, but this got way worse. I’d lie awake as pain spread through my tendons and joints, or I’d wake myself up with my joints popping every time I moved. Then came the wailing wall—crying, depression, anxiety, fear: CNS side effects. I was limping everywhere. I couldn’t walk ¼ mile, couldn’t walk through the grocery store without feeling like I’d fall over, could not make it through a day at work because my Achilles would swell and hurt and get weak. I had to work at home for a couple of months—a career-buster for sure. But I had no choice. I wasn’t getting better—I was getting worse.

I thought at times I would lose my mind. I thought at times I HAD lost my mind. I cried a lot. The pain was unreal at times. One night, it felt literally like someone was carving the tendon of my left forearm. I think I tried to deny it, but being floxed was really that terrifying and painful.

It’s now August 2013. This summer, I hiked 7 miles up Mt. Rainier. I now intersperse my walks with runs. I don’t run as far or as fast as I used to, but I can feel my calves getting stronger. My cardio has tremendously improved. I lift weights for my upper body, do core strengthening, and hike regularly.
I still don’t sleep well, but then, I haven’t since I was a baby. I still have some pain in my Achilles and knees when I push myself, but I push anyway, knowing I need to make them stronger. I get weird shooting pains, but maybe I had those before—I don’t remember. I consider myself 85% recovered. And I am tremendously grateful to be able to do the little things, like take walks with my guy and the dog, walk to the store to get a soda, or run to catch the bus.

My unsolicited advice to floxies as you heal, delivered with compassion and love and understanding:

1. Do not identify with your illness. Do not adopt a persecution complex about how the medical industry done you wrong. This will feed your symptoms. Do you want to get better, or do you want to be a victim?

2. Do not read stories about suffering fellow floxies. This will only make you worry. Your anxiety is likely already bad enough. DO read stories of healing, like this one.

3. DO invest in your life as much as you possibly can. (We took a trip down the Oregon coast when I was still hurting and limping badly. I couldn’t yet run or even walk on the beach, but I could smell the air and watch the waves. It helped more than I can even say.) Stay engaged with what brings you joy: friends, family, hobbies, whatever exercise you can manage. It’s OK if you do those things a little differently. Go to a museum but sit regularly on the benches and stay just an hour. Go to a baseball game but park in the handicapped spots close by and take the elevator. Modify but don’t abandon your life.

4. Don’t present yourself to the world, especially the medical world, as a medical-phobic weirdo who thinks that Big Pharma is poisoning you. ALL my doctors, physical therapists, and pretty much everyone else believed that Cipro caused my injuries. Present yourself as a rational being who needs help, as I did. Tell your doc if he doesn’t believe that FQs caused your symptoms that you disagree, but will he help you get better anyway? And if people don’t believe you are sick or that FQs caused it, brush them off. You know your body.

What worked for me:

1. Physical therapy. I had to start over a couple of times and I did have setbacks. But I kept going. Ultrasound therapy was the closest thing to a miracle for me. I could feel the difference in my tendons immediately.

2. REST. REST. REST. I hated hearing this. I was a runner. We don’t rest. But rest helped tremendously, just as it does when we have the flu. Sleep as much as you can and need to.

3. Custom orthotics and night braces from the podiatrist. Expensive but worth it. I still need insane amounts of arch support. I’m sorry that flats are popular now, because wearing them even to the mailbox would hurt. I still have to wear hiking or running shoes with lots of support much of the time. Cute shoes are generally not possible for me, though I do still wear my boots on occasion.

4. Whey protein and vegetarianism. I am now terrified of antibiotics and other crap in meat. I drank Muscle Milk after PT sessions, which seemed to help. Remember that even “organic” meat is inflammatory and hard on your kidneys.

5. Avoiding supplements. They did not work and often brought on their own symptoms. Fish oil made me terribly nauseous and sick. Glucosamine made me bruise easily. EGCG seemed to do little or nothing. Epsom salt baths made me hot and itchy. Fruits, veggies, whey protein, green tea, and lots of water seemed to help a little. Supplements are largely snake oil for the desperate. Don’t waste your money.

6. Patience. I have virtually no patience and am legendary for this character flaw. But I was forced to be patient because I had no choice. Once the FQ stops telling your body to create weak tendons, you have to build those tendons back as strong ones. It takes . . . .

7. Time. You’ll hear this over and over and want to smack people who say it. But recovering from some injuries and illnesses really does take time. I’m not sure if this is harder or easier for those of us on the athletic side of things. But the waiting and struggling is hard for everyone. It’s not unusual for tendon injuries to take a year or two to get better.

8. Expecting setbacks. Yes, expect them, because they will happen. They are normal. The body and spirit don’t heal on a linear basis. Healing is jagged and unevenly paced. Maybe the cycles are telling us to chill the heck out.

9. Refusing to give up. Some floxies have recovered after years of being injured or sick.

10. See #9. Don’t give up. Rest, but keep fighting.

** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.

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41 thoughts on “Jayne’s Recovery Story – Levaquin Toxicity”

Can you tell me how long the akathesia lasted? I didn’t know what it was called until you just named it, but that is the only symptom I have except of course insomnia! Because who can sleep when they want to move their body all night.

hi jayne, i hope you are doing well and hiking more and more. I’m wondering if you ever had problems with your hip that made it difficult to walk or caused you pain at night or even prevented you from sleeping on your side. I’m told i have “fluid on my hip” and have wondered if it’s from not walking much or walking awkwardly since i try not to put pressure on my knees, or if it’s just damage done by the drug. I would love to know if you also had hip problems that possibly cleared up in time? thanks. jb

T
hank you for your story. I am so hungry for these kind of stories. This morning I had to drag myself to see patients. It is incredibily hard but your story is giving me hope… I was a runner as well.
Anna

I was just wondering how many patients have u seen who have suffered antibiotic toxicity and fluroquinolone toxicity?
I am in agony from tendonitis and feel as though I am sitting on rocks.
Death seems attractive.

Thank you, Jayne. I am relying on these stories of hope to get me through this. You are right, some of the Internet stories can be anxiety-producing. I try to limit viewing to sharing what helps me to other sufferers. We need not ever forget where we were and continue to always help each other. Thank you especially for accurately describing the tendon pain you had as that is exactly how mine felt/feels. I tried describing it to the doctors and family and they always looked at me perplexed. I am nearly 11 months out and have seen some improvement from symptoms. At least I can go in the sun now, shop, go on the elliptical for about a mile, and keep up with my 2 year old. I still have chronic pain, but have noticed my nerve and tendon pain are exacerbated by foods. I literally can feel a floxing reaction while eating. High histamine foods, DAO blocking beverages/foods, and histamine liberators are the worst offenders. I am trying a low histamine diet, taking antihistamines and zantac, which, surprisingly, is a histamine blocker. I am feeling “baby steps” relief and hope this continues to help me. Thank you and hugs!

Thanks for the encouraging story. I was slightly alarmed by your endorsement of Muscle Milk, though. If I’m not mistaken it’s one of the very many protein drinks that are sweetened with acesulfame potassium, which has been strongly linked to cancer, especially breast cancer. There’s plenty of info on the WWW about this, so I won’t try to repeat it. Just a suggestion that you watch out for that. There are other protein mixes you can get that are sweetened with stevia, which seems to be much safer.

Thank you for sharing your story. I was floxed in 2008. Having over 30 side effects, many of which you’ve mentioned here, I have made a full recovery. I am healthier and stronger than I have ever been. I have to disagree with your statement that most supplements are snake oil. There are companies like Metagenics (EC Matrixx is amazing) and Amazon Herb ( their Camu Camu is a proven almost cure-all for neurological problems, herpes, cancer etc.) I took both of these and saw an immediate improvement that increased over time. My advice to anyone suffering injury from Quinolones, is get yourself a good homeopathic doctor and tell him/her to prescribe nerve salts and nerve remedies according to your constitution (which they will determine in one visit if they are the real deal). I wish you all the best.

If you are interested in writing up your recovery story for me to post here on Floxie Hope, I would love, love, love to hear it and to share it with fellow floxies. If you’re interested, please email it to me at floxiehope@gmail.com. Thanks and congratulations on your healing!

I used to work as a PTA before getting floxed. I had a home ultrasound machine before this happened. It gets a lot of us now. I agree with you– the ultrasound is just a miracle. It’s nice that I can do it before I go to work in the morning, or whenever I feel tightness starting somewhere.

Ryan,
I would never put the ultrasound machine that high for me. If the ultrasound heats up the tissues I get a rebound stiffness and this was true even before Cipro. I have met a couple patients who get the same issue, so it is something to be aware of.

You can get the same benefits from ultrasound without the heat. For floxies no heat is actually the best. Heat increases inflammation. We don’t need that.

I initially started at just 0.2 watts/cm2. When my tendons seemed ok with that I eventually went up to 0.4, then 0.6. The highest I ever went was 0.8 watts/cm2. I sometimes did twelve minute sessions instead of the usual eight. I did ultrasound usually twice a day. The frequent sessions at very low settings were the most effective for me.

Ultrasound helped my tendons the most. Loosening up my calf muscles was better accomplished by massage. The US would loosen up the muscles but the effect did not last. I used a frozen water bottle and really dug in there on my calves and that would give relief sometimes for hours.
Ruth

JB, I did have pain in my hips off and on, but I don’t particularly notice it any more. No significant persistent damage seems to have been done. I had a lot of widespread pain back then, but it’s eased probably 95%. I have done some more intense hiking and did not feel a darn thing in my Achilles last month.

Crystal and hicham, yes, the joint popping got much better. It did not lead to pain. I’d say it took a few months to resolve. Popping doesn’t mean something is dramatically or seriously wrong with the joint—popping is just popping. Though during a floxing attack, because your tendons and ligaments might be weak, I think it’s probably good to protect the joint from harm (bracing, being gentle, not doing extreme yoga, etc.) At least until you can re-strengthen them.

The frustrating part is that many of us seem to get worse before we get better. I sure did. The FQ needs to be done with your body before you can rebuild it.

I remain firmly cautious and skeptical about the use of herbs, which are not proven and dangerous at worst. Homeopathy violates the laws of physics, and as such, is a complete waste of money, unless you believe in magic water. Please don’t give people false hope.

Thank you for your positive message! As a former ~15 mile a week runner myself it is very good to hear. When did your tendon issues begin to resolve? I’ve been having major issues with my peroneal tendons, posterior tibial tendons, anterior tibial tendons…pretty much every tendon in my ankle! The worst is probably the posterior tibial tendon and I have to wear arch supports all the time. Did you have those issues as well? Thank you!

Hi Liz–I did have similar issues. They’re barely noticeable now, though. I still wear arch supports every day. But I can run and hike without pain, for the most part. I struggle a little on long, tough uphills and sometimes after scrambling over rocks. But not much.

I’d say at about the 6-month mark, things stabilized for 2-3 months. Then I slowly started improving. Your tendons need to stop laying down weak collagen and begin creating the healthy collagen again. Then you just slowly build them up strong, gradually adding activity and strengthening a little at a time. It can take 2 years for any tendon injury to heal, I am told (ugh, too long, I know!) And of course,I had setbacks, which are normal, when I pushed myself too far.

Hi Liz, I also had debilitating tendon issues in every part of both feet..all the tendons and the toes and the bottom of my feet and calves. I was given Levaquin In Sept of 2017. For the first 3 months could not walk.I am at the seven-month mark and can now walk, but still have extreme fatigue and other symptoms. HOWEVER, I need to tell you that in 2010 I took Cipro, unaware of its side effects. A month after, my ankle started to hurt, so I just wrapped it, and finally had cortisone shot which took all the pain away so I could go to Japan for my son’s wedding. All was fine and no pain until in __Sept..8 MONTHS AFTER TAKING CIPRO, I STOOD UP AND TORE 6′ in the peroneal tendon.(Surgery and a 5 month recovery) …So be careful after your tendon pain goes away. I certainly am this time! I don’t know what else to say…but your tendon issues will get better..magnesium, etc all the suggestions you read about need to be tried, but I also used KINGS BRAND braces, they are electrical braces which warm and send blood flow to the affected areas..I used them three times a day for months on my ankles and calves. They aren’t cheap but they are very important. This is my 2nd go around, with worse symptoms than before…..before I did not have any symptoms except a sore ankle..this time I thought I might die. But, I did not. I also did not realize until researching, that this takes a long time to get rid of, and that is what is the most difficult thing to accept and still somehow find some positivity. Good luck to you. I know how hard this is.

Hey Deborah, I have posted this before, but in case you didn’t see it…another alternative to surgery is prolozone injections (not to be confused with prolotherapy, which is a bit different). This is an injection of ozone and procaine, and it helps your body heal itself naturally. (Takes a few months to see results.) Offered by some NDs, integrative doctors, and sports medicine doctors.

Hi Jayne, I often read your story over again for hope. Once again I really appreciate it. You mentioned that you seem to get worse before you got better… I’m now almost 14 months out and feel like some of my problems have diminished or completely resolved but I have many more new ones. In fact I was walking great just seven months ago and then in January I had a bit of a relapse and now I have pain in my gluteus medius and minimus. In fact my orthopedic doctor just didn’t ultrasound and I have tendinosis in those two tendons. On a positive note, the fluid on my hip that was there seven months ago and also the micro tears in my groin tendons have disappeared or healed. But right now, I can only walk a few hundred yards each day. And the CNS symptoms seem to have hit me hard in the past week really for the first time since the first and second month. I have a little bit of dizziness occasionally, and also when I read it feels like my head is vibrating. This is lasted over a day now. I’m just wondering if any of this sounds familiar? And did you have some pretty severe CNS symptoms even a year or more after being Floxed? And can I ask what brand of whey protein powder you took? I’ve had great success with a plant-based protein powder but might want to also try a whey powder and alternate? Thanks so much! Jim

Hi Jim—the CNS symptoms for me mostly ended fairly quickly, within a few months. I think my balance is probably still a little off, and I do have some bad sleeping nights—-but I slept poorly before, so I have a vulnerability there.

I think I used Biochem whey protein powder. You want it as pure as possible. Whey protein is supposed to be super easy to absorb, though I’m not a nutritionist. If it happened today, I would also try a lot of the newer high protein flours and grains, like quinoa and teff and the like. It can’t hurt and they taste good.

I hope you are feeling better these days. Tendinosis really can heal–it just seems to take a really long time!

Hi Jayne did you have the terrible weird mental stuff going on . I have flight or flight, irrational thinking , crawl out of your skin anxiety depression . One minute I want to eat the next I want to cry the next I am irritable. I am only 3 weeks out from being Floxdd. How long does the really bad mental crap last?

iulianOctober 9, 2018 at 1:14 pm

hello how are you holding on ? i also have alot of bad thoughts anxiety and panick attacks(but they re less now) worst part is besides beying veeery tiered all day is the depersonalization, what helped with that ?

Hi Jimmy, please read the above comments I made to Liz. I also wanted to share that the CNS issues seem to come back, more mildly, when there are relapses. When I have a relapse..I can still walk, but my calf goes into atrophy overnite, (the skin looks like an alligators, but when I feel better, it goes away)..I get teary-eyed(I cried every and all day for the first three weeks), my bowels get clogged…fatigue and brain fog become debilitating, and I am now feeling cramps in my lower abdomen. Seven months out. Also hard to read or watch TV when CNS stuff acts up. One thing I have learned from this site..is no one recovers in six months or even a year..so I am more hopeful now when I do get relapses. Because it seems after the one year mark, although there are relapses, some people really do improve. We will be one of those!

Jayne,
Thanks for sharing your story. I was wondering how old you were when you were floxed and if this was the first time. Do you by any chance have a MTHFR mutation? I ask because, if not would possibly explain your quick recovery. Thanks .

Glad you are doing better, but your experience was vastly different than most of us when it comes to the medical community: “Don’t present yourself to the world, especially the medical world, as a medical-phobic weirdo who thinks that Big Pharma is poisoning you. ALL my doctors, physical therapists, and pretty much everyone else believed that Cipro caused my injuries.” Most of us had NO ONE believe us, and I must say, you are not a weird to think that Big Pharma is poisoning us. They are. For money.

“Most of us had NO ONE believe us, and I must say, you are not a weird to think that Big Pharma is poisoning us. They are. For money.” As a fellow (fellowess?) Linda, I could l not have said it better!

I am really saddened about your comments about supplements. While most supermarket supplements are worthless, there are high quality supplements that are lifesaving! I wouldn’t be where I am without them. Others readers, don’t believe this perspective! Nutraceuticals-if they are high quality- can turn your life around!!! Do the research.

If most of your doctors believed you, I have to say, you must be in the 1%. Most of us were not only not believed, but called delusional, hysterical, irrational, using pseudo-medicine. etc. Even Dr Jay Cohen, in his book “How We Can Halt the Cipro and Levaquin Catastrophe: The Worst Medication Disaster in History,” excoriates physicians for not believing patients and not understanding how pharmacology works….that it CAN continue to cause damage, that it CAN damage after only one pill, etc. And to ask them to help you get better…they haven’t a clue where to begin, even the ones who do think some of the problems might be caused by FLQs. They are not well trained (if at all) in nutrition and natural cures.

And sorry supplements did not work for you. I suggest you were not taking the right ones or the right brands. They, along with IVs saved me. To tell others to “Not waste their money” I am afraid is highly irresponsible. Especially something like fish oil. I was having horrific breathing issues and a DRUG RESEARCHER told me one of the first things I needed to do was take a good quality fish oil. It helps with heart health and many floxies have heart issues; It fights inflammation ( a HUGE issue with floxies); clotting; immunity and more. In Jay Cohen’s book, a doctor who researched the effects of flq toxicity for decades, he makes it clear how ESSENTIAL it is to supplement, especially with magnesium, E, and others. He devotes entire chapters to supplements. Sorry, but that was very bad advise you gave.

Hi Lisa, I completely agree with you regarding bad advice. I believe we should share what helped us, but there is not ONE mandate, black or white, that any one should advise another in this very complicated drug-induced disease. Each persons experience is different. I was wondering, I have thin blood and tend to get blood spots on my arms, and I was told Vitamin E thins the blood. So I have not been taking that. Do you know anything about that?Also, have you ever heard of anyone completely recovering before one year? Thanks for everything you do.

Great encouragement! This story has made my morning and kindled the belief of full healing! I’m 7years out from taking cipro but the effects hit me 15months ago. I’m prob about 70% healed and pain is the only problem to beat now.. I can do this!